A general thread on the PACE trial!

Good idea! I've been talking to Vincent about this. Hope it happens soon!

 

There is an irony here. It looks as though Cochrane Collaboration was set up in 1993. Given that the ideas must have been brewing for some time before that, this corresponds pretty well with the period when, in the UK, the doctors who believed in taking the evidence were side-lined. My experience, as I recall it, was that 1992 or 1993 was the time when the consultant who followed up the progress of my case was closed down, and a spurious clinic set up. Chalmers seems to have had some unhelpful friends in Health Watch.

I would say that five relapses in three months would be about right for early stage ME. We must not be harsh on Garner. He is coming to terms with brutal reality.

 

Excellent!

 

Does anyone have a copy of the journal that David Marks editted a couple of years ago to send to Garner?

 

Journal of Health Psychology
Special Issue: The PACE Trial

Volume 22 Issue 9, August 2017

https://journals.sagepub.com/toc/hpq/22/9

I imagine there are quite a few copies about.

 

Yes, I have a few. Will do this later.

It's a shame that the one signed by our very own Graham is the one I've highlighted and annotated.

 

Interesting point.

 

Yes.

 

The relationship between PEM, mental exertion and anaerobic threshold is interesting.

I studied biology, but I always had trouble with relating what was going on at the level of the organism, the organs, the cell and the biochemistry of molecular interactions in all forms of life. Usually each level is treated separately because it is easier

My ME has always felt as if most of my body works fine until it is called upon to do more. My body temperature is a bit low but stable until I get cold but it can't put the extra effort into heating me up again. Long before I was diagnosed I had to have a bath or use lots of hot water bottles to get my temperature up. Similarly I can't cool down if I get too hot.

Once a system has gone wrong it strains my whole body so it goes out of kilter and then I get PEM. It probably happens with processes below consciousness as well.

I don't know how you would go about testing it but I think it could be one of the keys to my illness.

 

I can relate to temperature control issues.

 

So can I and I don't have ME !

 

thanks for tagging us in this - I hadn't seen it and definitely agree he seems to be someone to link up with

 

https://twitter.com/user/status/1305122470614138880
first contact has been made!

 

The "PEM" post mental exertion is very different from the "PEM" post physical exertion and I wish more people would acknowledge this.

I personally do not experience any excess physical fatiguability after mental exertion (say, a Uni exam) over the next few days, provided I had sufficient sleep and so on. The only physical issues relate to the muscles that were used, eg eyes, hand/arm.

But if I was to physically exert myself, then this leads not only to physical fatigability, but also extra mental fatigue and brainfog over the next few days.

But I agree, it is not about reaching some sort of magic "anerobic threshold" heartrate. PEM can be induced without reaching this threshold heartrate. The tight coupling of heart rate and anerobic threshold only occurs during a ramped increase in exercise output (like on a CPET test).

The brain uses a lot of energy, and the two main hypotheses that explain the 2 Day CPET findings - endothelial dysfunction and afferent nerve peripheral sensitisation (potentially type II, III and IV fibres - Alan Light and others have investigated this sensitisation) and their spinal feedback loops do have analogues in the brain. The purpose of these afferents is inhibitory feedback, to increase predictability of output, when there is something unusual going on peripherally that leads to inconsistent performance, such as fatigue. The headaches also strongly suggest vascular involvement.

 

From searches of the Cochrane central database, a lot, if not all, of the research on the biological effect of exercise on ME/CFS (eg workwell) is not there.

see https://www.s4me.info/threads/indep...led-by-hilda-bastian.13645/page-5#post-240585

 

I believe that they required a certain number of subjects before they accepted papers for the review. Since funding goes to psychologists they can afford a big trial not to mention that they say that there is no risk from their treatments so they can damage patients to their hearts content while the 2 day CPET testing can't go to large trial because of ethical considerations.

if I remember correctly, the same thing happened with the research considered when they came up with SEID.

 

Trial By Error: A Short Talk for UK Docs and Researchers

https://www.virology.ws/2020/09/17/trial-by-error-a-short-talk-for-uk-docs-and-researchers/